USA: News from the Bateman Horne Center

looking at that photo; otherwise you might cut your finger off(?)

 

That is a very confusing image!

Now I am curious and want to watch it for myself.

I confess that I end up skipping most videos.

 

Free, professionally-facilitated online support group

Topic: How to Ask for Help

Tuesday, August 8
https://batemanhornecenter.org/event/online-support-group-52/

3 PM ET/8 PM Great Britain and Ireland

Find the time in your time zone here https://www.timeanddate.com/worldcl...ine+support+group&iso=20230808T13&p1=220&ah=1

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones. These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.

 

Tweet from the Bateman Horne Center advertising a video series on PEM.

"PEM is unique to #MECFS and has not been documented in ANY other illness, absent even in those suffering post-chemotherapy complications. Access the full series here: https://bit.ly/3s4a3us"

 

Free, professionally-facilitated online support group
https://batemanhornecenter.org/event/online-support-group-53/

Tuesday, August 15

Topic: Creativity with Disability

3 PM ET/8 PM in Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230815T13&p1=220&ah=1

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the monthly
support groups are designed to include people with ME/CFS, FM, Long
COVID, and co-existing conditions. We also welcome supporters and
loved ones.

These sessions are led by Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.

 

Thursday, August 17 Lunch & Learn – Virtual Event

Topic: Interior design, remodeling, and refreshing rooms with a chronic illness.
https://batemanhornecenter.org/event/lunch-learn-virtual-event-41/

Agenda
– 15 to 20 minute presentation by a community participant on an illness-related topic
– Announce the “get to know you” question
– Separate into virtual break-out rooms for introductions and discuss the “get to know you” questions

1:30 PM ET/6:30 PM in Great Britain & Ireland
Find the time in your time zone here
https://www.timeanddate.com/worldcl...–+Virtual+Event&iso=20230817T1130&p1=220&ah=2

 

https://www.youtube.com/watch?v=84BVPaGdSJU

Post-Exertional Malaise (PEM/PESE): Clinical Attributes, Part 2 of 7
Bateman Horne Center


This video series is intended to review the clinical presentation, scientific underpinnings, and treatment approach for patients with post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE).

For an abbreviated version highlighting the clinical pearls, please watch videos 1, 2, and 7.

Videos 3-6 offer a deeper dive into the scientific and evidence-based pathophysiology of PEM/PESE.

***
Post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE) is an altered physiological state and pathognomonic finding unique to ME/CFS that is now being recognized in those with post-acute sequelae of COVID-19 (PASC), also known as Long COVID.

It is critical that healthcare professionals recognize PEM/PESE and support the patient in avoiding a push-crash-cycle which can exacerbate disease processes and contribute to worsened long-term functional prognoses.

In video two of this seven-part series Brayden Yellman, MD, and Lucinda Bateman, MD, review a cross-sectional study conducted by Dr. Lily Chu, et.al, outlining triggers, time to onset, symptoms and duration of PEM episodes. The phenomenon of variable intensity and frequency triggers for PEM has often been likened to an analogy of debt. Dr. Yellman concludes the video detailing how individuals with PEM/PESE can easily slip into this "energy debt" or "crash cycle," which demands ample and adequate rest and physiologic supports in an effort to return to baseline.

***

This video was made possible by the OMF-funded Medical Education Resource Center (MERC) at BHC, our generous donors, and viewers like you. Video citations: Chu L, Valencia IJ, Garvert DW, Montoya JG. Deconstructing post-exertional malaise in myalgic encephalomyelitis/ chronic fatigue syndrome: A patient-centered, cross-sectional survey. PLoS One. 2018;13(6):e0197811. Published 2018 Jun 1. doi:10.1371/journal.pone.0197811

 

(5 minutes)

Bateman Horne Center

Post-Exertional Malaise (PEM/PESE): Cardiopulmonary Exercise Studies, Part 3 of 7

Part of an educational series for health professionals

https://www.youtube.com/watch?v=y_AKa8Qjuog

 

Free, professionally-facilitated online support group
September 12 @ 1:00 pm - 2:00 pm MDT Free
https://batemanhornecenter.org/event/online-support-group-54/

3 PM EDT/8 PM Great Britain and Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230912T13&p1=220&ah=1

Topic: Strategies for Approaching Treatments
Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.

Advance Registration Required.

 

Bateman Horne Center

https://www.youtube.com/watch?v=_fGqMhHsZDY

Post-exertional malaise (PEM)/post-exertional symptom exacerbation
(PESE) is an altered physiological state and pathognomonic finding
unique to ME/CFS that is now being recognized in those with post-acute
sequelae of COVID-19 (PASC), also known as Long COVID.

It is critical that healthcare professionals recognize PEM/PESE and
support the patient in avoiding a push-crash-cycle which can
exacerbate disease processes and contribute to worsened long-term
functional prognoses.

In video six of this seven-part series Brayden Yellman, MD, and
Lucinda Bateman, MD, examine the physiological happenings within the
brains of those with ME/CFS.

Video details:

- Microglial cells & proinflammatory cytokines (IL-6, TNF-alpha, and
interleukin-1-beta)

- Magnetic resonance spectroscopy & metabolic activity associated with
neuroinflammation - Brain lactate & Choline

- Brain thermometry

- Positron emission tomography (PET): measuring radio-labeled isotope
ligand to the translocator protein (or TSPO)

- Default Mode Network (DMN) uncoupling in ME/CFS

This video was made possible by the OMF-funded Medical Education
Resource Center (MERC) at BHC, our generous donors, and viewers like
you.

Citations:

Torres-Platas, S.G., Comeau, S., Rachalski, A. et al. Morphometric
characterization of microglial phenotypes in human cerebral cortex. J
Neuroinflammation 11, 12 (2014).
https://doi.org/10.1186/1742-2094-11-12

Mueller, C., Lin, J.C., Sheriff, S. et al. Evidence of widespread
metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue
syndrome: assessment with whole-brain magnetic resonance spectroscopy.
Brain Imaging and Behavior 14, 562–572 (2020).
https://doi.org/10.1007/s11682-018-00...

Nakatomi Y, Mizuno K, Ishii A, et al. Neuroinflammation in Patients
with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An
¹¹C-(R)-PK11195 PET Study. J Nucl Med. 2014;55(6):945‐950.
doi:10.2967/jnumed.113.131045

Rayhan RU, Baraniuk JN. Submaximal Exercise Provokes Increased
Activation of the Anterior Default Mode Network During the Resting
State as a Biomarker of Postexertional Malaise in Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome. Front Neurosci.
2021;15:748426. Published 2021 Dec 15. doi:10.3389/fnins.2021.748426

 

September newsletter from the Bateman Horne Center:

https://batemanhornecenter.dm.networkforgood.com/emails/2742865

The section on Educational Resources talks about their new video series on PEM.

 

Bateman Horne Center

Free, professionally-facilitated online support group

September 19

https://batemanhornecenter.org/event/online-support-group-55/


3 PM EDT/8 PM Great Britain & Ireland

Find the time in your time zone here:
https://www.timeanddate.com/worldcl...ine+support+group&iso=20230919T13&p1=220&ah=1

Topic: Let's Talk about What Works

Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a
general discussion for the last half of the hour. Both of the monthly
support groups are designed to include people with ME/CFS, FM, Long
COVID, and co-existing conditions. We also welcome supporters and
loved ones.

These sessions are led by Meredith Mehner, LCSW, who has personal
experience navigating life while living with a complex chronic
illness.

 

Lunch & Learn – Virtual Event September 21
https://batemanhornecenter.org/event/lunch-learn-virtual-event-42/

Topic: Stories: A Way to Share Hope & Connection

"These friendly sessions include a brief presentation by a participant, followed by break-out groups to discuss the "get to know you question." Individuals with ME/CFS, FM, Long COVID and their supporters are invited"

13:30 EDT/18:30 in Great Britain & Ireland
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...t+September+21+&iso=20230921T1130&p1=220&ah=2

Agenda
– 15 to 20 minute presentation by a community participant on an illness-related topic
– Announce the “get to know you” question
– Separate into virtual break-out rooms for introductions and discuss the “get to know you” questions

 

Bateman Horne Center

In Video 7 of the PEM series (

https://www.youtube.com/watch?v=oLC2tZMPbsE

), Dr. Brayden Yellman highlights the critical importance of resting and utilizing a careful regimen of both physical and cognitive pacing to avoid entering a physiological state of post-exertional malaise.

Resources:
Crash Survival Guide bit.ly/3Q4U89c
Pacing for PEM bit.ly/3D42XZe
PEM Series bit.ly/3s4a3us

[Comment: I'm not sure whether it was a good idea to mention low dose naltrexone in this video. If trials show it is of limited or no benefit, it might detract from this video in the future though I suppose they might have the option to edit it (though whether this was likely to be done, I'm not sure)]

 

Medical Education from the Bateman Horne Center:

The Untreated Epidemic: Understanding and Treating Long Covid and ME/CFS

Educating healthcare providers, medical students, patients, and caregivers
Keynote Speaker: Lucinda Bateman, MD

Monday, November 6
Noon to 4 pm Eastern Time

In person and virtual attendance options. Pre-register here:

https://docs.google.com/forms/d/e/1FAIpQLSdHfxsY-SflFNmEzMy1X2d58ZAaf99eTeTALtGMXQzMGZDt3w/viewform

 

I got this announcement from the Bateman Horne Center but I wanted to add that this is being sponsored by a state chapter of #MEAction, #MEAction New Hampshire. More details here:

https://www.meaction.net/countries/usa/state-chapters/newhampshire/

They are taking donations here (tax deductible in the USA):

https://donorbox.org/medicaleducationatdartmouthhitchcock

 

Free, professionally-facilitated online support group Tuesday, October 10 https://batemanhornecenter.org/event/online-support-group-56/

15:00 ET/20:00 in Great Britain & Ireland

Find the time in your time zone here: https://www.timeanddate.com/worldcl...ine+support+group&iso=20231010T13&p1=220&ah=1

Topic: Perfectionism Support Group Format

The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.

 

October 19 Lunch & Learn – Virtual Event

Topic: "How to Talk to Your Primary Care Provider"
https://batemanhornecenter.org/event/lunch-learn-virtual-event-43/

ET 13:30/Great Britain & Ireland 18:30
Find the time in your time zone here:
https://www.timeanddate.com/worldcl...–+Virtual+Event&iso=20231019T1130&p1=220&ah=2


Agenda
– 15 to 20 minute presentation by a community participant on an illness-related topic
– Announce the “get to know you” question
– Separate into virtual break-out rooms for introductions and discuss the “get to know you” questions

 

It's a shame this overlaps with the NIH Roadmap webinar on the immune system (https://event.roseliassociates.com/me-cfs-research-roadmap/agendas/)